Tag Archives: My life

Dr Alemayehu Part l

Posted in September by

A Friday morning appointment with Miss Cathy and her neurologist, Dr Alemayehu:

“How has your summer been?” He asked her after we were seated in the examination room.

“Oh fine, fine”, she replied, eager to update him, “it’s been wonderful ever since you said that I could stay at home by myself; gosh, you don’t know what a blessing it’s been not to have to go anywhere when my son goes out-of-town. It feels wonderful so I truly thank you.”

“So”, the doctor said smiling at her, “you’ve declared your independence! Well, that’s very nice, I want you to know that I prayed for you.”

“Did you, oh bless your heart, thank you doctor.”

“Now”, he said suddenly becoming more doctor and less old acquaintance, “ I want to ask you a couple of questions.”

“How do you function? “How is your memory?”

“Well”, she said,” I do alright, but I get nervous.” When he asked what she meant she told him about the earthquake and having to go to the emergency last month because she was so upset over her granddaughter being in the hospital.”

He listened but didn’t comment right away, then he said, “I want you to take this pen and paper and I want you to do something for me but I want you to listen carefully before you start.”

He told her that he wanted her to draw the face of a clock and to put in the numbers where they should be, then put the hands of the clock on 10:45. Satisfied that she understood what he was asking of her he got up from his seat and left the room.

I looked on from my chair in the corner as she drew the circle, then the number “6”, then the “12” and the numbers 1 through 5 down the right side of the clock (pretty good so far) then she put the number “9” almost in the center of the circle and the rest of the numbers were in the right order but they were more or less vertical instead of following the left curve of the circle that represented that side of the clock.

“What time did he say,” I heard her ask herself,” was it 10:45 or 11”45?” Then she looked at me and asked me, “What time did he tell me-11: 45?”

I mimed zipping my lips and she said, “Come on now, hurry up and tell me so we can get out of here.”

“No can do,” I said, “ It’d be like helping you cheat on a test.”

Since she drew a very short hand that went from the middle of the clock to the eleven and another verrry short hand that pointed toward the nine it was hard to tell what time she was trying to indicate. But when she was finished she wrote “11:45” at the top of her page so that her intent wouldn’t be misinterpreted.

Dr Alemayehu came back into the room, sat down in front of her once again and studied her drawing. “Do you think this right?” and when she said she thought it looked like a clock he said, “ I’ve never seen a clock with numbers running up the middle and the time was supposed to be 10:45.”

But he seemed satisfied (enough) with the drawing so he continued with his questions.

“What floor are we on?”

“First”

“”What kind of office is this?”

“Neurology doctor”

“What’s the date?”

“Eight, August, twenty-eleven.”

“Who’s the President?”

“Dr….uhh, Obama.”

“The one before?”

“Oh, I will never forget him-Bush.”

Then he showed her the word “world” written out on a piece of paper and asked her to spell it backwards.

Next week: Part ll

This ‘n That ll

Posted in September by

Routine and structure seem to be the anchors that ground a person with Alzheimer’s and this is definitely true of Miss Cathy. She has a set routine and it (more or less) seems to work for her on a daily basis. Most days she’s content with being at home, talking on the phone, taking her nap and watching television. But even within the confines of that familiarity there are the occasional mood swings (usually misplaced anger) that can erupt within the course of a routine day and they are (still) surprising and hurtful but (now) it is about as bad as an unsuspecting pinch on the arm.

I’ve noticed that having a routine can be a double-edged sword because with each day being the same it becomes hard for her to distinguish one from the next. So, occasionally she will forget what day it is but let’s face it, who wouldn’t-living like one of the characters in the movie “Groundhog day”.

Days when she has to venture outside of the condo like a trip to the doctor’s office or to the market can be very stressful for her. Even after a seemingly good day, being out with her girlfriend, Adele she’ll come home pretty much worn out (no matter how “good” a day she’s had). More often than not she’s visibly drained, agitated, and grumpy, leaving me to wonder sometimes how long it will be before she stops venturing out all together.

She does like to busy herself with “projects”, some big, some small. It could be anything from organizing her calendar to going through old paperwork or looking through her closets to find things to donate to charity.

Miss Cathy doesn’t want for much and seems to me to be content to complain just for the sake of hearing her own voice most of the time (and that’s cool, because most of the time I’m only half listening anyway).

Lately thought I’m finding that she will start a project but I’m the one who ends up finishing it, or if I don’t have to finish then I need to make sure that the project’s completed and there are no loose ends to tie up.

The other day I came into the living room to discover that she’d “re-potted” a plant but when I looked down into the new, larger pot I could see that she’d done no more than stuck the plant (crooked) in the larger pot, leaving the roots exposed.

When I called this to her attention she said, “I know, it needs some more soil to fill it in but the bag was too heavy.”

I’m thinking, “Okay, that makes sense but the bag has always been heavy so why even bother?” Unless of course she knew that I would have to finish re-potting the plant in which case that would make her a pretty clever duck.

I’m okay, You Okay? Part l

Posted in August by

Standing in my bedroom I could sense “something” coming before I could see or feel it. I guess it’s kinda like the intuition that animals have before something bad in nature occurs, only I’m not feral enough to know what it means or when you’re suppose to run.

Before I could make sense of what was happening the room started shaking and everything around me was moving; the walls, the floor, all vibrating as if it were an everyday occurrence and it was the room’s time to come alive. A lamp on a bookshelf across from me started to fall and I knew that I couldn’t reach it in time but I instinctively reached out to steady the things nearest me as I watched the lamp tumble and bounce for a second or two as the floor moved beneath me.

I stood there, staring at the lamp; the shade crooked, at an odd angle, like it was a person who’s neck had been broken in a fall. Suddenly, pulled out of my dark reverie, I remembered that there was something more important than the lamp or the objects I was holding so I started down the hall to find Miss Cathy.

In the few seconds it took to reach her in the dining room all was calm. I could see that she was visibly shaking as she asked, “What was that?”

“It was an earthquake”, I said plainly, her reaction clearly that of someone who didn’t quite believe what she’d just heard.

I couldn’t blame her really; it’s not the first thing you’d think would be happening, this wasn’t Los Angeles or San Francisco, we were on the East coast, very close to Washington DC where we only read about such occurrences. The only reason I knew with any certainty was because I had experienced an earthquake before. It happened in New York City in the early ‘80’s when I lived on the fifth floor of a six-story apartment building in the East Village.

It was the middle of the night and I remember waking up to what sounded like a loud crash, I thought a semi or some other large vehicle had slammed into the side of our building, that would “explain” the noise but then the entire apartment started to shake. I held onto the bed for dear life not knowing how to process what I was seeing and feeling.

It ended almost as soon as it started but those seconds felt like hours while it was going on, after the vibrations and sound of things falling and shifting there was an eerie quiet that (to me) rang in my ears as loud as the quake itself. There was no major damage from that quake but it was recorded at 5.0 and something that hadn’t happened in New York in more than a century.

Although I didn’t know the official number for our area (yet) it definitely felt a lot milder than what I’ve experienced before. But, being as it was mom’s first quake it didn’t matter if it registered as 1.0 or 10.0-it was just as upsetting.

My instincts told me that the worse was over so I got Miss Cathy settled on the sofa and I walked back through the condo to check to see if there was any damage. I “right-ed” pictures that were askew and picked up objects that had toppled over.

I received a text from my ex, Chad asking “U ok?” and I text’d back, ”I’m ok, u ok” not knowing if he-in the Midwest (or the entire country for that matter) had just experienced the same thing. He’d contacted me so soon after it happened here that I just assumed the same thing was happening to him (later he told me that he was in his car when the news came on the radio so he text’d me right away concerned about Miss Cathy and me).

I rejoined mom in the living room and watched the TV with her. The news reporter announced that a earthquake had just hit a majority of the East coast, registering 5.9 at the epicenter in Mineral, Virginia, about 80 miles away from where we lived. Miss Cathy (now convinced) sat in amazement, digesting what she was hearing and seeing.

“I thought something was going on upstairs in Ron’s apartment.” she said, “I heard this rumpling sound and I looked up at the ceiling fan and I thought it was odd that it was shaking so I thought he fell or dropped something heavy up there to make it move like that.”

She tried calling his apartment but the phone wasn’t working.

Looking out the sliding glass doors that lead to the balcony I could see that neighbors from the apartment complex across the parking lot were streaming outside, coming together as people seem to do when a common experience occurs, huddled together trying to make sense of what had just happened.

“I’m just so nervous, I can’t stop shaking.” She said, “ I didn’t know what in the world was happening, how did you know it was an earthquake?”

I reminded her of my long ago experience in New York and how it’s such a strange feeling that once it’s happened you never forget it.

She seemed to be handling it all pretty well, I thought. I was concerned about her shaking but I wondered if that wasn’t adrenaline-you know, the whole “fight or flight” feeling that takes over our bodies when situations are “heightened” (as this was pretty “high” on the list of things that had happened to her lately).

I asked her if she wanted a glass of water and sat with her after she declined the offer. Given how she’d reacted to recent doctors’ appointments and other mood swings, I have to say (other than the shaking) she was calmer than I thought she’d be but I was no less worried about her. There wasn’t much I could do for her besides sitting with her but sometimes that’s enough.

I had been getting ready to go to work when the quake hit so I got up go back into my room to finish getting dressed. I asked Miss Cathy if she was all right and if she wanted me to stay with her.

“No, I’ll be alright,” she said, “I’ll get myself together after a little while. That’s not going to happen again is it?”

“No,” I said, “probably not, but there are usually aftershocks can come after the initial quake but they’re usually much milder.”

I could see that little factoid didn’t give her much comfort but I had to finish getting dressed and I kept reminding myself that she said she’d be “alright” (I kept repeating this assertion to myself to assuage any guilt I was feeling about leaving her alone).

I must have asked her “are you sure you’ll be alright, I don’t have to go to work, I can stay here with you” half a dozen times. Each query seemed to receive the same tepid “I’ll be fine.”

I picked up my bag and headed for the door going over my rationalizations for leaving
(against a gnawing in my gut that I should stay), using “I’ll be fine” as the green light to go.

It’s interesting isn’t it how we ask a question not wanting an answer so much as permission to do whatever it is that we know we shouldn’t but we’re not quite ready to take ownership of the action, instead, “asking” absolves us of any responsibility for that which we know we shouldn’t do.

Next week “I’m okay, You Okay?” Part ll

Paper Chase Pt lll

Posted in August by

“So, the way I see it, we have three things that we want to accomplish in the meeting with the lawyer,” I said, by way of beginning my prep with Miss Cathy for the meeting with Cheryl Henderson later that afternoon. The day had finally arrived when all of the research, preparation and paper work would come together so that we could finally start the process of getting mom’s (legal) affairs in order.

“The first thing is to get the clock started on Medicare.”

“Medicare?” Miss Cathy queried,” Don’t you mean Medicaid?”

“Right, right”, I said dismissively, eager to get back to my larger point, “Medicare, “Medicaid-I just got them confused, you know what I’m talking about.” I started to continue to outline what the meeting was about but Miss Cathy was having none of it.

“Well, it’s important to say what you mean, I just wanted some clarification.” Sounding like the elementary substitute teacher that she was after she retired from thirty years working with the federal government.

“Okay, but you know what I meant, so can you do me a favor and let my mistake slide, I’ve got a lot of other things on my mind so can you not ‘nit pick’ every word.”

“Why is it that you get to question me but I don’t get to ask you anything?” she shot back, clearly not in a mood to be conciliatory.

“Jeesh, are you really going to start this now?” I thought to myself, “I could be back in New York right now doing something fabulous but I’m here like a good little secretary with my notebook and pen, doing my best Roz Russell impersonation trying to get you ready for a meeting with a lawyer about your “shit” (not mine) and you’re going to play “tit for tat” with me today? Really?”

But, as frustrated as I was she did have a point and I had to acknowledge it so what I said was, “you know what, you’re right, it doesn’t seem fair, you should get to question me as much as you want but we don’t have a whole lot of time before we need to leave and I’m just trying to get through this before we have to go. So, can you do me a favor and just let “one” slide and not correct me every time I say something out of turn when you know what I’m talking about.”

“I don’t like your tone.” She said.

“Okay, I’m out.” I said closing my book and putting my notes away,” I’m going to go take a shower and maybe we can start over again later.”

“Good, you do that,’ she said, “maybe that way you can take some time to get yourself together, it seems to me that you have a little attitude.”

“Jesus Christ”, I muttered under my breath (but loud enough to be heard) as I walked out of the living room.

Tony sat on the couch during this little exchange watching us morph into George and Martha from “Who’s afraid of Virginia Wolff’ without saying a word.

I took a shower and rinsed away any resentment that was building up in me and came back into the kitchen ready to move on. Miss Cathy was cooking breakfast and Tony was keeping her company.

“I want to talk to you when you get a minute”, I heard her say in my general direction, her back to me but I could tell by her tone and the way she kept her back to me that she was as hot as the skillet on the stove.

“Okay, shoot.” I said and sat down and listened as she told me how she felt disrespected and how angry she was. “I don’t like the way you talk to,” she said,” and I will be respected! Now before we go in there and change things you better make sure that you want to be here because you can always go some place else.”

“Wowsa!” was all I could think. Her telling me that ‘I was unhappy’ and ‘could leave anytime’ was turning into a recurring theme lately, but I chose to ignore that and focus on what was more important and that was the fact that she was upset and I’m the one that made her feel that way. I told her (quite sincerely) that I did respect her and the last thing I wanted was for her to get upset and for that I was truly sorry.

“You know, I’ve got to tell you something, I know I’ve told Tony and a few other people but maybe I never told you but I’m the one that chose to be here, nobody asked me too, not you, not Tony, no one-it was my idea and I haven’t regretted it for a one minute. There are a few things that I know for sure and I know that at the end of my life I will always remember making the decision to come stay with you as one of the best things I’ve ever decided to do in my life.”

I looked over at her and I could see that she heard me, that she needed to hear me say that.

“Well, okay,” she said and just like that the storm passed as quickly as it came.

“Do you want eggs to go with your scrapple?” she asked.

After breakfast we finally settled back down in the living room to discuss what she could expect in the meeting. I told her that it was important for her to give the lawyer the impression that what we were doing was ‘her’ idea and that she wasn’t being coerced or manipulated by Tony or me.

Part of the reason for prepping her was so that we could rehearse what she needed to say and tell her what the key points were and hopefully keep her from rambling off topic.

She seemed to understand what we were doing, especially after we stressed that all the preparations for long term care in a nursing home were for ‘down the road’ and that nothing that we talked about would change her life now (or for a long time hopefully).

Tony and I both knew that any talk about ‘nursing homes’ had the potential to get her agitated and upset and we wanted her to be calm for the meeting and to not act like we were conspiring to ship her off to a home and run away with her money. We talked for a good forty minutes or so; entertaining her questions and making her feel as comfortable as we could about everything. She seemed satisfied with what we’d discussed so we set out for the short drive to College Park, Md where the lawyer’s office was located.

Seems like every time I’ve been to Cheryl’s office I’ve always got someone else with me, first it was just me, checking out her seminar, then I came back for a consultation with Tony and now Miss Cathy was with us as the secretary ushered us into the now familiar conference room.

A few minutes after we were settled in our seats Cheryl Henderson, the lawyer walked in and introductions were made. Cheryl greeted Miss Cathy warmly and gave her a hug, and then she looked at me and said, ”Where’s my hug?”

I’m not much of hugger, especially in a business setting but ‘when in Rome’ ….

With everybody hugged and seated we could finally begin. The next hour or so pretty much revolved around Miss Cathy (as I thought it would). On one hand it made sense to prep mom beforehand so that she’d have an idea of what to expect and what to say but in the final analysis it really didn’t matter because her short term memory is so spotty that it’s a crap shoot whether she’ll remember what we discussed and rehearsed so you really just genuflect and hope for the best.

It’s not like she was being interrogated but Cheryl was pretty much focusing all her energy and conversation on Miss Cathy, she’d heard from Tony and me already and she knew what we wanted (on mom’s behalf); now she wanted to hear it from Miss Cathy herself.

I sat silently and tried to look supportive as Miss Cathy answered the questions asked, sometimes faltering but always charming and trying to please. I could see that at times the questioning was getting a little overwhelming but she didn’t complain or get irritated.

“Do you know why you are here?” Cheryl asked.

“Well”, Miss Cathy said hesitantly, then she sat up in her chair more confidently and answered, “I’m here to get my affairs in order.”

Next week, part IV

False Alarm

Posted in August by

I was walking with my friend William down Park Ave after we’d seen the Alexander McQueen exhibit at the Met earlier today. It was one of those rare, lovely, breezy summer days in New York where it’s a joy to be outside so we were taking advantage of being out in it. We were spontaneously on our way to Grand Central Station because William had never been to the Manhattan landmark before and I was excited to show it to him and show off what I knew about the bustling train station.

I’m in New York City for most of this week-some fun and some work; this was one of the “fun” days (or so it started, but I digress).

He turned to me and said,” How is Miss Cathy doing? Are you okay leaving her while you’re here in the city?”

“You know,” I said upon reflection as we dodged cabs and other pedestrians crossing Vanderbilt Place, “I do.” “I mean, I still worry but I make sure that she has everything that she needs before I leave for a trip, I make sure to go over with her where her emergency alarms and numbers are and I tell Tony to be on guard.”

I keep reminding myself that the doctor says it’s good for her to be on her own (especially now while she still can be) and I just try to let go of worrying about what might happen.

I told him about my increasing concerns over her cooking and forgetting how hot the burner is but I can’t get her to turn the flame to low, so, I have to let that go, too (and I’ve developed a taste for everything being “blackened”- I choose not to see it as burned, kinda like the glass being half full-with bits of char in it).

She had just called me to ask, “Did you just call me?” (I had not) which prompted William’s inquiry. She sounded good, full of her usual chatter about everything that she was doing. When she told me that she’d been downstairs to visit a neighbor in the building I thought to myself, “Good for her! I’m not gone 24 hours and she’s already done more socializing than she’s done in the past month-I should go away more often.”

I was pretty content to move on with my day.

After cocktails and an early supper at a trendy restaurant in the neighborhood known as Hell’s kitchen (I know-only in New York right) I was walking back to the apartment I was staying in and figured it was as good a time as any to check my voicemail.

I’d noticed a call earlier from an 800 number but thought nothing of it when I saw that it was from “Provo, Utah”. I don’t know anybody in Provo so imagine my surprise when I listened to the message that it was courtesy call from the alarm company telling me that the EMS had been dispatched because they couldn’t reach anyone at the apartment and for me to call another 800 with the pass code to find out any further information.

WHAT!? Huh? I had to stop on the street and listen to the message several times to try to remember the number to call and stop myself from going into full on panic mode. I never could get the number it right either because of adrenaline or street noise, which was frustrating. I didn’t have my messenger bag (read: “man purse”) with me (of all days) I didn’t have a pen and paper. I was near the apartment where I’m staying so I got inside as fast as the elevator would take me upstairs, trying to call Miss Cathy in the elevator (and there was no answer) so I rushed in to listen to the message (yet) again and call the number given to find out what was going on.

I gave the young man that answered the call all the relevant information as requested including the pass-code that mom made up (thank God I remembered it or they wouldn’t be able to give me any information). He put me on hold (just long enough to feel like forever and for my mind to start to come up with the most god awful scenarios). He came back on just before I had time to think up the worst and he said that the alarm had been set off three times. They were able to talk to mom and verify that two were false alarms but they didn’t reach her the third time so the police were dispatched “as is protocol”.

I listened then asked for more information but he said that that was all that he had, the only other thing he could tell me from the notes that he had on the computer screen in front of him was that my brother was called when they couldn’t reach me.

I listed to what little he had to say but I needed more. Part of me understood that he was doing his job and telling me all that he knew so it would be foolish to keep asking him questions that I knew he couldn’t answer but I couldn’t stop myself, it was like I had “questioning turrets”-I couldn’t shut up. I had to make myself stop asking him for answers (and lets face it-comfort and reassurance that everything was okay) and get off the phone with him and call my brother.

I called my brother’s cell phone and it went directly to voicemail, I called my sister in law and got the same thing, I called the apartment once more in hopes of reaching somebody and it rang until voicemail clicked in.

Now I was getting really worried but I was more pissed than panicked that no fucking body was on the other end of the line and I needed to know what was going on!

I thought to call our upstairs neighbor; Ron (one of Miss Cathy’s other “sons”) in the off chance that he heard something or hopefully knew something.

He picked up on the second ring (thank you Jesus) and he told me (quite calmly) that everything was okay; it as all a false alarm and that Miss Cathy was downstairs asleep.

“Asleep?! Asleep?!” What the ……I’m sitting here mentally multitasking how soon I can pack, if I need to pack, what time the next train to DC was/is and deciding just how much guilt I’d have time to heap upon myself on the train ride home and she’s asleep!

Of course I said none of this as I listened to Ron, he told me that there was a freak summer rain this afternoon that was very intense and the wind had knocked over several of the plants on the balcony. Miss Cathy was attempting to go out to make things right and forgot to turn off the alarm as she pushed the sliding glass doors open. Apparently the sound of the alarm got her rattled so she forgot the pass-code to reset the system and she really started to panic when the security company started talking to her through security system, which is a box on the wall in the kitchen.

She calmed down enough and was able to give them the information they needed to re-set the system but somehow she set off again, and again she was able to give them the info needed to re-set the system and call of the cavalry but what I don’t know yet (because she’s “asleep”and not answering the phone) is why she didn’t, couldn’t or was too flustered to do the same thing the third time she set the alarm off by mistake.

When they couldn’t reach her the third time they sent out the police who came to the apartment and used the pass-code on the lock-box on the front door to gain entry (which really freaked her out) and she couldn’t find her ID to prove that she was who she is (I had left her ID on the living room table for her but it’s my fault that I didn’t specifically hold it up for her to make sure that she knew it was there-I just left it where I “thought” she was sure to see it next to her daily pill box.

Fortunately, this is when Ron heard the ruckus and came down and vouched for her as the owner of the apartment. The police were still not convinced that she wasn’t being coerced into saying that everything was alright so they conducted a search of the entire apartment to make sure no one was in one of the back bedrooms attempting to do her harm.

Satisfied that it was all a mistake they left and the alarm was reset. Ron sat and talked to her for more than a half hour then left when she said that she was going to bed.

So, thanks to Ron I now know that she’s all right and I don’t have to “worry”, worry. I can only assume that the storm knocked out the cell towers where my brother lives so that’s why he can’t reach me (or not, but I’m not going to lose any sleep worrying about him tonight). I am going to give Miss Cathy what “for” for not picking up the phone.

I know her very well and I know that she sleeps with the phone next to her bed and she can pick it up and answer or ignore it-it’s her choice you know she’d be a “chatty-cathy” and pick up if it were one of her girlfriends calling with some gossip or one of the country relatives of unknown relation calling but just because the “alarm” is over for her-it’s “false” of her to think that she isn’t the only person impacted by the events of her day.

“Luu-cy, u got some ‘spaining to do”

Paper Chase Part ll

Posted in July by

A few weeks after my phone call with the lawyer, Cheryl Henderson, I attended her estate-planning workshop with about a dozen other people, all of us eager to find out how best to take care of our loved ones. While there was some valuable information shared and I learned a few new things, it mostly validated the work that my brother and I had already done on Miss Cathy’s behalf. Back when Miss Cathy was fist diagnosed with dementia in January of 2010 it was Tony’s idea that we draw up a POA (Power of Attorney) and a Medical Advance Directive, turns out these were the two documents at the workshop that were stressed as the “foundation of any good estate planning” because without them one has very little power or control in matters concerning their loved one in times of need. Knowing that we’d done something right (and were on the right track without even knowing it) made me feel pretty good about the choices we were making for our mother.

I mean lets face it, we were doing our best and what we were doing was out of love for our parent but “love” isn’t going to going to convince a doctor to follow your orders in a medical emergency, you gotta have the right paperwork-and you’re going to need it before you have to decide whether to pull a plug or switch somebody off.

Anyway, I was impressed enough with the seminar (and the lawyer) to suggest to my brother that we meet with her. After comparing everyone’s schedules and going back and forth a few times I was able to make an appointment for early June (remember I started this process in late April). That gave me plenty of time to fine-tune my list of questions for the meeting (after gaining a better idea of what to expect from the seminar and a clearer understanding of the process we were about to undertake).

I was most intrigued by the “Veteran’s Aid and Attendance Benefit” so my first order of business after the seminar was to call the Veteran’s Administration. I was on hold for about fifteen minutes (whattayougonnado) but ultimately it was worth it because the representative was very helpful when he finally came on the line. I found out that our situation isn’t as straight forward as some others because my step-father served during World War ll and record keeping was spotty back then so Eddie, the representative didn’t immediately find him in the system but he assured me that just because my Pop wasn’t showing up on his computer that he could be found somewhere, somehow.

I think that anyone that’s going to call the VA to inquire about a deceased Veteran should have the Vet’s social security number and (more importantly) their discharge papers when you call (the more information you have when you call a government agency the better!) and always, always document your call by asking for the representative’s name, a case number and be sure to note the day/time of your call (that’s a little “Ty tip”;).

Having this information at the ready is helpful as you follow up with questions at another time because chances are that whomever you speak to is going to ask who you spoke to previously.

Eddie was able to give me some basic information as to how my mother could possibly qualify for the little known monthly stipend paid to widows of war vets. As expected, the paperwork is extensive and to qualify you have to be practically destitute but “nothing ventured (except time) by applying and there could be as much as a thousand dollars a month for Miss Cathy to gain based on need. The representative promised to mail the necessary forms and information to me (info is also available on the Veteran’s Administration website at http://www.va.org).

If you find the website as complicated as I did, it may be well worth the wait to call the VA at: 800-827-1000 (just make sure you have your knitting or a crack pipe to suck on while you’re on hold waiting to speak to someone-another “Ty tip”;)

Later that week Tony and I had a phone meeting to go over what I’d learned and to talk about what we (each) wanted to accomplish at the meeting with the lawyer. My brother and I work very well together and it definitely helps to talk things over before speaking on our mother’s behalf so that we’re on the same page. Even though we’re family and we have the same goals our approach may sometimes be different as to how to get there so I always think it’s best to compare notes ahead of time so that we show a united front. The system; doctors, hospitals, lawyers and the like can sometimes be less than welcoming to loves ones of a person in need so the last thing they want to encounter is bickering siblings with divergent agendas.

We decided to bring as much documentation that we thought might be necessary (Miss Cathy’s social security card, deed, will, bank account, as well as some of our deceased step-father’s information). I think there’s nothing worse than being asked for something in a meeting that you “thought you might need” but don’t have with you so why not bring it along-just in case, after all, it’s just paper.

The laywer’s office was quiet and serene on the day we had our meeting, it was not crowded and buzzing with activity the way it was on the day I came for the estate-planning seminar. The receptionist led us into the conference room where I sat weeks earlier but this time there we only three of us in the room.

After introductions we settled into our seats and began. Cheryl told us about herself and her practice (more for my brother’s benefit because I’d already heard her spiel). When she asked why we were there we took that as our cue to dive right in. Tony told her what we wanted to do and I read to her our list of questions. We finished by asking her if she could help us.

She listened to what we had to say and took notes about our questions, then Cheryl told us that there were a few ways to accomplish what we wanted then she gave us the pros and cons of each scenario. At one point she said, “If I had “this or that” document then I would be able to tell you “such and such”, and wouldn’t you know it-we had most of what she was asking for so we were able to get specific information from her about our situation and quickly more away from generalities.

We discussed Irrevocable Trusts, Revocable Trusts, Life Estate (Ladybird) Deeds, Personal Care Agreement, Medicaid and the VA Aid and Attendance benefit and tax implications among other things.

One of the things we realized after talking with the her is that a will is not a great option for us; probate can be expensive and the estate (what little there is) could be tied up in the courts for up to a year (something to think about when you’re planning for those left behind after your loved one has passed away). It sounds as though one of the Trusts is better suited for our needs to accomplish what Miss Cathy wants to happened with her things and the Personal Care Agreement will help take care of planning for her inevitable stay in a nursing home.

As for Medicaid, it’s a great government program that pays for long term nursing home care, but the individual is responsible for a portion (if not all of the expenses associated with the nursing home) if the individual goes into a nursing home before the five-year period after they have applied. The “five year look-back” determines the individual’s financial situation and there ability to pay for their own care, so the clock starts ticking only “after” you apply so, the sooner the better. If your loved one goes into a nursing home five years after you apply then the gov’t pays for everything. If they have to go in before, then they (or you) will be responsible for the nursing home costs until the five-year time “window” is closed.

It’s important to know that Medicaid will never take someone’s house while they are alive, but monies owed for care will be recuperated after the sale of the home upon the person’s death unless other arrangements have been made to dispose of the property and/or have the home exempt as an asset that Medicaid can put a lien on.

As you can imagine, the meeting lasted well over an hour and by the time we left my head was swimming with all the info that was floating around in it. Thank God Tony was there because I needed him to help me figure out what the hell was said in the meeting and what works best for us.

After much discussion we’ve decided to move forward with the Personal Care agreement (which includes help applying for the Veteran’s Aid and Attendance Benefit) as well as an Irrevocable Trust.

So, now we’re gearing up up to meet with the lawyer one more time in early August to get the ball rolling and so that Cheryl can meet Miss Cathy. In the interim I’ve been gathering the following documents and paperwork for our next meeting; Marriage and divorce decrees and certificates, Death certificates, Birth certificates, Deeds, Bank accounts, Military discharge papers, Monthly household expenses, Names of doctors and hospital visits, Social security award letter, Physician’s statement and Proof of income-Oye Vey! That’s a lot of paper!

I know that we’re among the lucky ones because Miss Cathy is still able to be part of the planning and the process. She can express to us what she wants to happen to her (and her things) after she’s gone so we can all work together to make that happen. A lot of people don’t have the luxury of their parent’s cooperation and input; one in particular comes to mind. I have a friend who’s parent is much farther along in the disease than my mother so he doesn’t have his parent’s input or cooperation, he’s acting alone to plan for long term care and doing the best he can to decide what happens “after”. Unfortunately (and this is an oft told tale) he and his loved one are at odds because his parent’s dementia makes him not able to fully understand what is happening so he’s combative and his behavior is often detrimental to the process (of their adult child making preparations for the parent’s long term care and passing).

I think it’s important to be able to honor your loved one’s wishes and provide for their needs as best as possible and at the same time take in consideration those left behind and the burden they may have to bear. Death and dying and long-term care can be uncomfortable conversations to have but they’re important and you’ve got to have them, especially if your loved one is capable talking about those things.

Alzheimer’s is a baffling and cunning disease so if your parent or loved one is in the early stages, start the conversation now-if there disease has progressed past the point of their involvement then do your best to honor them as you see fit-after all, you’re among (or you are) the closest person to them and I always feel that if you’re acting from a place of love then whatever action you take can’t be wrong.

So, I know we’re lucky and I know that even with all the paper I have to chase it’s worth it so that Miss Cathy’s wishes are honored and she’s taken care of properly. The more I can do now the better chance that no one (i.e.-me) is buried under a mountain of red-tape and paperwork down the road.

Romancing the stone (granite)

Posted in July by

Last Thursday was Miss Cathy’s quarterly visit to her primary care physician, Dr Granite; just a tune-up to kick the tires. As usual she’d been “mentioning” the appointment daily for the last week so when the day finally arrived she was all ready with her list of questions and sitting on the couch ready to go before I’d finished my first cup of coffee. She always gets a little “wound up” (anxious, hyper and nervous) whenever we go to see one of her doctors so I was having second thoughts about something I needed her to do.

My brother, Tony and I have met with a lawyer about setting up her estate and putting things in place so when the times comes and she needs to go to a nursing home that Medicaid will cover the entire cost. We’ve got a lot things going on and part of the process requires a form to filled out by her doctor. I knew I could ask the doctor about it but it might come off as predatory, like I was setting her up to rip her off (and I gotta say-it’s not like she’s Crystal Carrington and this is Dynasty or anything, but still…. ) so I thought it best if she asked for the form since he was her doctor and they have a good rapport.

The form that we need filled out is very subjective and completely voluntary so a lot of doctors don’t want to get involved, so it might require some finesse and tact to get it (and while Miss Cathy has still has many wonderful attributes “finesse” and “tact” are not two of them). But, it’s a pivotal part of what we’re trying to accomplish so it’s important. I took my time and patiently, in as simple a manner as possible told her that we still haven’t gotten anything finalized with the lawyer but it would be great to know if the doctor was even “willing” to help out. All that we needed from him right now was to know that we could count on him at some point in the future.

I stressed that all I needed was for her to ask Dr Granite was for his help at some point in the future with a form that would state her condition and that her son (me) is her primary caretaker-sounds easy enough but the simplest things can be complicated in her present condition. I took great pains to be as specific as possible and prep her on exactly what to ask. To be fair, I was springing all of this on her just an hour before the appointment but I thought better last minute than days earlier when she might forget or get confused.

As expected, she had a ton of questions, and they just kept coming-from the obvious to the inane, I felt like I was being ravaged by a swarm of bees. Patiently (without scratching myself) I tried my best to answer all of them knowing that the more she asked and the more she knew, the more likely it was that she’d get confused. But, all I could do was hope for the best and remember what I’d learned in AA, “take the action and let go of the result”.

As I stood getting ready to leave she looked up at me from the sofa, looking like a little girl lost and said, “I don’t know why but I’m nervous all of sudden.”

I suddenly wondered if I’d put too much pressure on her by asking her to talk to the doctor, or if she felt nervous that she’s say too much or get it wrong. I told her that she didn’t have to worry about talking to the doctor about the form, she could just stick to her list of questions and I would take care of it if that made her feel more comfortable. I started for the door but couldn’t shake the vulnerable look on her face from my mind so I went back to her, gave her a hug and said that I hoped that would help ease her nerves. She smiled back at me and then we were off.

We waited for the doctor in the tiny exam room after the nurse went over Miss Cathy’s vital signs. Dr Granite came in soon after and they fell into their years old pattern of small talk; catching up on each other’s lives with a few laughs and jokes before settling into the business at hand.

When the doctor asked her if she had any questions she made a big production of bringing her crinkled piece of notebook paper out of her handbag and all kibitzing aside she became very business-like and serious as she went down her list asking about her arthritis, the nausea she had a few weeks ago and a “popping’ she felt in her knee. Satisfied with the answers (and most of all his reassurance that everything was fine) I could see her fidgeting a little, winding herself up for the “big” question.

After “hemming” and “haw-ing” a little she said, “Doctor, I want to ask you one more thing..” She started to stammer about “putting her affairs in order” and “a piece of paper the lawyer says she needs” and “wanting her children to be able to do as she instructed” (jeez, it was painful to listen to her but I let her finish because I was the one that asked her to speak to the doctor. And, as wrong as she got it and as exasperated as I was, I couldn’t help but be proud of her for trying).

I could see the doctor trying his best to understand her, his eyes trying to follow her train of thought, like watching a drunk trying to walk a straight line during a sobriety test and all you saw was them weave from point A to point B, still you hoped they’d get to the end somehow. He listened (patient man that he is) and then, seeing an opportunity when she paused (just for a second) he jumped in to venture a guess and said, “You’re talking about a form that states your wishes?” and she said, “Yes, that’s it!”

“You’re talking about a ‘living will”.(No, actually that’s not what she was talking about)

They smiled at each other, very satisfied with themselves that they’d figured out the riddle. He assured her that she didn’t need him to fill out that “form” and any lawyer could supply that document for her. She seemed a little confused but determined because knew she hadn’t succeeded in getting what I’d asked so she tried again to ask for his help but this time I jumped in before she lost him completely (and I had to listen to her struggle to get it right).

I told Dr Granite that we already had an Advanced Medical Directive in place and that’s not what we needed. I said that we (she) were working with a lawyer and putting together her Personal Care Plan and we might need his help filling out a form so that she can get a “Child caregiver exception” to help expedite the rules that Medicaid have set up to be accepted for long term care. He took a moment to digest the information then said, “sure, just bring me the form and I’d be happy to help.”

There was sign on the wall of his office (one that I’d never noticed before) that Miss Cathy had seen when we first walked in that stated that forms and other documents were to be filled out at the doctors discretion and will be billed separately from the patient’s insurance. I told her not to mention the sign but of course she did, she couldn’t help herself.

He shrugged and seemed to dismiss it saying that it’d been there for years (so I took this as a “sign” not to worry about it). Not satisfied (after the doctor had just agreed to help us and had all but told us to not worry about the sign) Miss Cathy just would stop talking about the sign and let the subject drop. Once again, as soon as I found an opening to cut her off (not in a mean or rude way-I just waited for her to take a breath, regardless of whether she had finished her thought or ended her sentence) I reminded her that it was the doctors’ office, hence his rules and to let him finish talking. She acquiesced and he continued, he told us that lately a lot of his patients had been turned down for long term care for one reason or another and that concerned him, but not to worry, he was willing to help in any way that he could.

Miss Cathy thanked him and before she got up go to another room to have some blood drawn as she has had done hundreds of times before she said, “I don’t know why but I’m nervous all of sudden.” And like Blanche Dubois in “A Streetcar named Desire” she innocently took the doctors hand as helped her up out of her seat to prepare for the short walk down a familiar hall.

Reaching out

Posted in June by

I was talking to my good friend Stefano the other day, telling him that I’d been reaching out to people on Facebook more and that I had “friend-ed” someone I knew through him. He told me that he had just told this same friend about my blog because his friend was going through a similar situation with his mother and suggested that we talk to one another.

I had no idea of his situation when I “friend-ed” him, only remembering that he’s an interesting person that I met in New York but was living in Europe that I hadn’t been in touch with for awhile. Well, I don’t believe in coincidences and wasn’t surprised when Lester, the friend and I were on the phone soon after talking about Alzheimer’s.

He told me that a little over a week ago he had flown to New York to visit his mom in Queens after being in Los Angeles for work. He said that he was surprised by how different his mom was, that he knew something was wrong with her and that something had to be done immediately to get her help. I listened to his story, verbally nodding in agreement and acknowledgement that I knew exactly what he was talking about as he related stories of her erratic behavior.

His situation is different from mine (of course, no two experiences with dementia are exactly alike). For one his father is still alive, but elderly himself so isn’t able to cope (mine is dead) and Lester’s brother lives on the West coast (and mine is only an hour away in Virginia) so he’s more or less doing all of this by himself but the end result is the same-he’s the adult child of a parent that now needs his help to guide her through the end of life as she guided him at the beginning.

I listened as he told about her conspiracy theories, paranoia, forgetfulness, confusion and his very real fear that she was going to get in a car accident because she was still driving herself to school where she still teaches. He said that she was very clever about how she covered up her shortcomings and had developed shrewd methods to compensate for her mental deterioration.

I could hear in his voice how tired and sad he was and there was a moment as we talked when I could hear the realization hit that his mother as he knew her may be gone forever.
I told him to think of her in a different light, to (take some time and) mourn the loss of the mother he knew but to remembered to hold onto the love (which is still there and always will be) and to focus on developing a new relationship and new bonds with her, as she will be ever changing because of the disease.

From all that he told me and all that he’d learned (and learned to do) in just a week’s time I told him that he’d done a remarkable job considering. I shared bits of my experience where it made sense but tried to be sensitive and remind myself that this wasn’t about me and my experience-this was about listening and hopefully helping someone who was just joining the “brotherhood”.

As we talked I made a few suggestions; I learned in AA years ago never to “tell” someone what to do, the normal reaction from most adults (and kids, too) is to put up a wall and become defensive when being “told” what to do so whatever you’re saying never gets a chance to be absorbed, processed or possibly acted upon.

So I “suggested” that he not argue with his mom and that right now “being 100% honest with her” (which was the basis of the relationship that he had with her before all this happened) wasn’t as important as getting her to the lab for an MRI and an appointment with a neurologist for a complete evaluation to determine what her condition is and at what stage. I told him that I’m very much of the “ends justifies the means” school and to lie to her if he had to achieve his goal which is to help her.

I told him about Alzheimers.org (an organization he said he didn’t know existed) and how helpful they’d been for me with everything from resources to support groups. I told him about the legal ramifications of what he was about to undertake and what he might need; power of attorney, medical directives, estate planning, etc as well as thinking about long term care facilities and how to plan for that. I could imagine that his head was about to explode form so much information coming at him all at once. He said that it was more than he had anticipated but that he was grateful.

The best piece of advice I gave him was one that was given to me early on by several people-that as a “caregiver” to make sure that he takes to take care of himself.

I didn’t really know what that meant in the beginning, so focused was I on my mom and her welfare that I wasn’t really doing the best job of taking care of myself, so I don’t think I was best prepared for the “marathon” that this process of care is instead of the ‘sprint” that I was my initial approach.

Truth be told, l think that I’m “just’ beginning to take care of myself (a year into this process) which definitely impacts how I can care for my mom. But, it takes what it takes and as Maya Angelou says, “When you know better, you do better”.

I told Lester that he wasn’t alone and that he could add me to list of people to call for support or if he ever just wanted to vent and have someone to listen (and not give advice, judgment or an opinion) I was here for him.

I got off the phone realizing that in talking to someone who was new to all this that I knew more than I thought I did. I was sorry for his situation but happy (for lack of a better word) that I could reach out and give what so many have given to me by way of support, empathy and information.

Folding chairs

Posted in June by

Last Friday morning I walked into the kitchen for my usual coffee before my brother and I were headed out for an appointment with a lawyer to go over Miss Cathy’s estate. Tony had come over the night before after work to surprise mom with the visit. I knew she was very happy to have “her boys” all to herself and would be in the kitchen whipping up a fattening, artery clogging breakfast as only a mother could.

So, I wasn’t surprised when I saw Miss Cathy standing over the sink but something wasn’t quite right. It only took me a second to know by her less than usual “peppy” response to my salutation and the way she was slumped over that something was wrong. I went over to her, looked at her face and saw that she looked confused and disoriented.

Perspiring heavily, it looked like she was gripping the counter for dear life so I told her I was going to put the folding chair behind her so that she could sit down. I didn’t know what was going on with her but I knew that it was imperative to sit her down before she fell down. She wasn’t very communicative and her movements were very slow, as if she were trying to show me that she understood what I was saying but her body just wasn’t responding the way she wanted.

She didn’t seem able to move much at all; she just seemed to hang on. Seeing that she wasn’t making much progress on her own I held under her armpits and helped guide her down to the chair as gently as possible, talking to her the entire time, telling her what I was doing and how far she had to go before she was seated, reminding her not to “plop” down in the chair which is her habit.

Once she was seated I was able to look at her more closely and ask her a few questions to determine whether she might have been having a heart attack or stroke. It didn’t appear that she was so I got her a glass of water and wiped her brow and neck. Once I got her to sit down she couldn’t seem to calm down, she squirmed with what little strength she had until finally I was able to quiet her. She then told me that she thought she as going to throw up.

I reached for the nearest thing I could (which was an empty planter) and gave that to her while I went to her bedroom where she told me she had a supply of bags for vomiting. When I got back she had not thrown up yet but she’d dropped the planter, unable to control her fingers. She retched more than she threw up but there was some fluid and it seemed to help her to expel it.

I was able to keep her calm enough to sit for a few more minutes before walking her to her bedroom so that she could lie down. In her bedroom I got her to sit quietly as I debated with myself whether or not to call her doctor but in the space of those moments I took deciding she seemed to get better, I could actually see that the confusion was leaving her face and her movements became more fluid.

We took her blood count and it elevated (222 and her blood sugar is usually in the 140 –to 150 range). By the time we made the first “stick” she was talking in her normal voice and insisting that she wanted to go back in the kitchen to make breakfast. We got her cleaned up and I made the decision not to call the doctor but to tell him abut this episode when we see him next (which will be soon). I watched her as she walked (she insisted that she could walk un-aided) back in the kitchen and I sat with her as she prepared breakfast for my brother and me.

I reminded her that if she had been alone this was one of those occasions when she should have pressed her “medical alert” button and she agreed. But watching her “in the moment” it concerns me now that I don’t know that she would have had the presence of mind to do that. I know for a fact that if I hadn’t come into the kitchen she wouldn’t have had the wherewithal to pull over the chair that was less that a foot away for her to sit herself down.

She may have been able to hold onto the counter until whatever it was, low blood sugar, excitement about my brother being here or just a wave of nausea passed, and then do whatever was necessary to keep herself safe but I don’t think that would have been the case. She very well could have fallen and we would (potentially) have a repeat of the episode that started this entire journey in January of last year when she fell on the bathroom floor and wasn’t discovered for three days.

I know that the slightest interruption (good or bad) in her routine can cause a change in how she acts or responds, from something as very subtle as her demeanor changing to something like what happened on Friday. I don’t know if that was the case or not, that’s something I’ll talk to the doctor about.

After all the bickering, boredom and cost to my personal life its moments like last Friday that remind me why I’m here and I’m grateful that I can be. Like my friend William says, who takes care of (not only) his mother but his father as well, “It’s an honor to be able to spend the time with them and to do whatever I can to make there lives more comfortable after all they’ve done for me.”

Give me my flowers as I live so I can smell them

Posted in June by

I took Miss Cathy to another funeral this morning. They seem to be one of the few things she gets dressed and leaves the apartment for these days. Hey, I’m just glad she’s getting out and “getting some air on her” as she used to say to my brother and me when we were little and she wanted us out of the house (and out of her hair).

It’s a fact of life that as you get old-old people around you start to die. Years ago, I remember asking my Pop about death and dying after so many of his friends crossed over. There was a period of time when it seemed that almost every time I called home he (or they) were going to a funeral. At the time this phenomenon was specific to Pop because he was considerably older than mom so they had friends almost a generation apart.

As a former New Yorker, where going to a shrink is as common as getting your bagel with a “smear”, I was prone to “navel gazing “ and introspection after my time on the couch so I asked him how he “felt” about his peer group passing on. He looked at me as if I wasn’t as smart as he’d given me credit for and said, “Well, how do you think I feel?” “ After your last friend dies all you’re doing is waiting for your turn.”

Now I’m wondering if Miss Cathy is thinking the same thing because the mood has been a little funereal around here. It doesn’t help that the sermon she was listening to yesterday on Sunday morning television was all about “Love, peace and passing on”.

She doesn’t get maudlin and she’s not a very sentimental person but every now and then, she gets reflective-especially around occasions like the one today.

So, yesterday, I was surprised when she stopped me as I walked through the living room, past the reverend and his sermon, on my way out to the balcony to enjoy the cool morning air. She said she wanted to tell me that she never forgot a trip I made in my car from Kansas City a few years ago when I drove nonstop and slept in my car for a few hours before getting here as soon as I could.

She said that it touched her heart that I would show my love for family by dropping everything and doing what I did. I told her it meant alot to me to hear her say that. I started to well up watching her get misty-eyed.

“I believe in letting people know what they mean to me while they’re around to hear it”, she said, “some people wait till it’s time to go to a funereal to let what they feel be known.” “I don’t believe in all that, that’s just a “show”.

Then she looked me in the eyes and said, “Give me my flowers as I live so I can smell them.”